Middle-late stage care

[SarahAF]

Hello everyone,
My Mum is in her early 80s and has had dementia for the past four years. She was diagnosed as having Alzheimer's a year ago. She doesn't know she has it and when she was showing early signs refused to discuss her memory problems or discussion with her Doctor. She has recently declined rapidly, very very muddled speech, doesn't know who my Dad is, or where home is. My Dad cares for her - he's 85 - and doesn't want any help either. We live at the other end of the country, although other family near by. She keeps asking to come and visit, how will she get here etc, so I go along with that, but feel so guilty as it won't happen. She seems so unhappy and disturbed and I can make little sense sometimes of what she's saying. She phones 3 - 4 times a day, my Dad dials etc .... She is eating, swallowing ok, but things feel as if they are on a real slide. She is on donepezil 10mg. Is there any other medication to help her? What happens when she's really declining, do Alzheimer's people go to a hospice? I have POA but can't get much support from her Doctor, so at a loss. What's the next stage? Will she just slip away? Sorry for huge ramble, I've not connected with any help before. With thanks,

 

[lemonbalm]

Hello @SarahAF

If this is a sudden change, it's possible that your mum has a urine infection, which can make existing confusion much much worse. I would suggest taking a urine sample to the GP and getting that checked out (not always easy to get a sample I know).

If your mum is disturbed and unhappy, it would be worth asking her doctor if they can prescribe something to help with agitation and depression - a low dose anti-depressant like Mirtazapine can be very beneficial.

Has your mum had a care assessment? I will post a link with details of how to get one shortly.

 

[lemonbalm]

Assessment for care and support in England

What are care assessments and how can people with dementia and their carers access them? This information is for care and support in England.

alzheimers.org.uk

 

[Sarasa]

Hi @SarahAF and welcome to Dementia Talking Point. You'll get loads of help and support here. It's a very friendly place to ask for advice or just offload.
It must be very difficult living so far away, I guess as well as your mother not being able to visit you, you haven't been able to visit her and see how things are. Does your dad have help coming in. It might be worth suggesting that he contacts social services for an assessment of your mother's needs and for those of your father as her carer. There might be a delay due to covid, and your father might not want to admit that help would be useful.

Does anyone in the family have Lasting Power of Attorney for your mother? This will be very useful in the future if you do need to make decisions about her care. In the UK most people with dementia are either cared for at home or move to a care home, rather than a hospice. Do you think a move into care might be needed soon.

This link is to the Alzheimer's Society's Factsheets which should help answer some of your questions. Using the search bar at the top of the page for topics you are interested in will bring up any threads on that topic.

I hope you'll be able to visit your mum soon and see for yourself what support you think she needs. In the meantime keep asking away here.

 

[Weasell]

Welcome, your post contains a lot of questions so I will attempt to answer them.

You are handling her request to visit very well. You just have to tell her it will happen soon but at the moment , excuse excuse excuse.......
The link to compassionate communication may be of interest. If dad is struggling it may be worth printing out for him.


Communication as it might help your mum. https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

On dementia care help comes in two forms, with savings over 23.5 thousand you pay for it.
Less than that social services do an assessment. They offer carers visits. They offer more carer visits. Only when this has proved to be not enough do they offer any kind of care home.

The medication could perhaps be tweaked but there is simply no magical medication out there. Worth a discussion, so the opportunity to be as good as she can be is not missed, but don’t raise your expectations too high.
You may wish to discuss if she would benefit from an anti depressant?

She may slip away. The question you are asking here is ‘ how long is a piece of string’ ?
If I or anyone else could answer that question we would start our own business and become millionaires.
What I can tell you is that people on the site have had dementia for over twenty years. Others have been bed bound and being fed in care homes for many years. The answer is you just can’t tell.
My mother with heart failure and dementia is going strong while all her younger supposedly healthy friends drop like flies!
It is unusual for people with dementia to go into a hospice. I don’t know why, but I suspect it is because people with dementia ( my mother being an example) can look as if they are dying for a few weeks and then they perk up ? I think hospices deal with things like cancers where the outcome is far more predictable. The perking up then serious decline can go in circles . But with dementia everyone is different.


Sadly when no help is accepted ,then situations often only change when a crisis happens.

Has anyone applied for attendance allowance? Could this be spent on cleaners or gardeners to help your dad ? Also have you looked into council tax reduction.

I have just hired a private carer. Mum didn’t want a carer, but was happy if one of the neighbours helped out. My new carer is acting so well as a helpful neighbour she deserves an Oscar!

 

[SarahAF]

Hello @SarahAF

If this is a sudden change, it's possible that your mum has a urine infection, which can make existing confusion much much worse. I would suggest taking a urine sample to the GP and getting that checked out (not always easy to get a sample I know).

If your mum is disturbed and unhappy, it would be worth asking her doctor if they can prescribe something to help with agitation and depression - a low dose anti-depressant like Mirtazapine can be very beneficial.

Has your mum had a care assessment? I will post a link with details of how to get one shortly.

Thank you. I will take your advice and get a sample done, and suggest a low dose antidepressant too. Take Care.